Why am I not allowed to carb count?

[KleboldKlan]

I've been diagnosed for 2 years in April, the diabetic nurses told me I had to have diabetes for at least 1 year before I started carb counting. I went back after a year and a half and asked them if I could start carb counting, they told me I was not allowed. They didn't give me any specific reason.

I tried doing it on my own, and got frustrated, but the fact is they should be helping me, I shouldn't have to do it on my own. I've seen mostly everyone with type 1 is carb counting and it gets me upset at the fact I can't do it. I just want to learn. They always have a go at me for having high sugars but if I am not getting as much insulin as I should, then that is their fault!

Even when I was in hospital they just gave me my pens, showed me how to use it then gave me leaflets and sent me on my merry way. Has anyone else had this problem? or can anyone try and teach me, just the basics really.

 

[Radders]

How very odd. Do you have any other health issues or disabilities that might explain why they think you shouldn’t be carb counting? If not I can only cynically assume it’s to do with money! They possibly don’t have enough places on carb counting courses for everyone who’s diagnosed.
There are books you can get which will help you to do this but the basic method they use on the DAFNE course I attended is to start with a ratio of 1 unit to 10g carbs then record pre meal readings and carb amounts for a couple of days before beginning to tweak this ratio, a little at time, to achieve levels which are within 1-2 of the pre meal dose by the time of the next meal. Only ever changing after two readings confirm the need. It does assume that your basal insulin is keeping you level, and that the insulin you are on is appropriate, ie rapid and not mixed.

 

[Sally71]

It really annoys me when I hear of people who want to learn to carb count but aren't allowed, it can only be to do with money! My daughter got her pump only 8 days after diagnosis, and when you are on a pump you have to carb count because that's how they work. We were lucky, most people who want pumps have to wait ages to get them, but there was a trial just starting comparing pumps with MDI in newly diagnosed children. And they had to be very newly diagnosed, i.e. within 10 days! So within just those few days we had to get our heads around the diagnosis and the fact that our lives had changed forever, learn the basics of injections and how to manage the condition that way, then with no prior training we got the pump and on the same day had to have a session with pump rep and nurse to learn how to set the thing up and do basic functions, then have lunch (inputting carb info from the back of sandwich packets in the hospital cafe), then our entire carb counting course consisted of half an hour with a dietician and a copy of the carbs and cals book, and then we had to just learn as we went along, going back a few days later to do the first set change and refill under supervision etc. It was absolutely mindblowing brain overload, but somehow we got through it without any major disasters and haven't looked back since.

I agree with Radders that there is absolutely no reason for you not to do a carb counting course, it can only be because they don't have enough spaces on the courses and not enough money to run the courses more frequently. If they keep going on at you about your blood sugars being too high then all you can do is keep replying with "well maybe they would go down a bit if I could go on a course and learn how to do it properly"!
They must see so many people with diabetes who just stick their head in the sand, pop the pills and hope it will all go away without even trying to look after themselves (sadly there are a lot of those about), you'd think they would be more encouraging when they actually meet someone who wants to put the effort in look after their health properly

 

[khskel]

Same as @Sally71 half an hour with the dietitian and a copy of carbs and cals. I also did the Bertie course online.

 

[Mark T]

Unless of course, the nurse doesn't know how to do it...

 

[trophywench]

Are you on suitable insulin to do the dose adjustment - not a mixed insulin?

 

[SB2015]

If you are in mixed insulin it will be unlikely that you would have the flexibility to make any adjustment doses. However it is unusual for T1s to be put on mixed insulin, although if dealt with at the GPS this may happen more often. If you are in the care of your GP and the practice nurse who has an interest in Diabetes, ask to be referred to the hospital team.

If you are on MDI with separate background insulin and bolus insulin to balance with your meals then carbcounting makes life more flexible. When I was diagnosed I was told that they wanted me to wait until after the honeymoon period before I went on the carb counting course. So I had to wait 18months, and then once on the last I waited another 6 months for a place. However in the mean time, like you, I realised that the more I ate the more insulin I needed. The Diabetes Specialist Nurse was happy to give me the basic idea, but it was still good to get on the course, as I then understood it fully.

Keep asking and get to see a specialist team. The Practice staff are used to dealing with T2 and often have little/ no knowledge of working out carb to insulin ratios that we need once counting carbs.

 

[KleboldKlan]

I'm on Novorapid and Tresiba. They've mentioned the DAFNE course to me before, but they told me I couldn't do it. When I go to the clinic the diabetic nurses go around the room talking to people and ask them "how the DAFNE course is going?" It gets me so upset, I sometimes go to the toilet and cry, I know that sounds pathetic, to get jealous of people doing a course but I just want to make my diabetes better, I lost track after my granddad died in November. I stopped checking my sugars, I still do my insulin, but like I have said I can't correct my doses because I don't understand carbs.

 

[khskel]

I think you really need to push for an answer. There may or may not be a good reason for their decision.

 

[Sally71]

Exactly what I was just thinking - ask them why they think you can't do it, and see if you get a sensible answer! I wanted to add, we were told by our nurse that if my daughter had stayed on injections (the trial was randomised and we had 50% chance of getting the pump) they wouldn't have taught us carb counting immediately because it's too much to take in all at once when you haven't even got over the shock of the diagnosis. Even they didn't like the fact that the trial had to begin so quickly, and certainly I had some days when I didn't know if I was coming or going! I'd like to think that they would have only waited a few months though, not years!
Also, I don't think there are any "proper" carb counting courses for T1 children and/or their parents, so we'd probably still have only got some time with the dietician.

 

[SB2015]

I'm on Novorapid and Tresiba. They've mentioned the DAFNE course to me before, but they told me I couldn't do it. When I go to the clinic the diabetic nurses go around the room talking to people and ask them "how the DAFNE course is going?" It gets me so upset, I sometimes go to the toilet and cry, I know that sounds pathetic, to get jealous of people doing a course but I just want to make my diabetes better, I lost track after my granddad died in November. I stopped checking my sugars, I still do my insulin, but like I have said I can't correct my doses because I don't understand carbs.

It sounds as if you need some support to get back to testing your BG. Using the DAFNE principles dependent on your testing at each meal, but this can be a vicious circle, as it seems that their not offering you the course is leading to your not testing. How much have you talked to the about how you feel?

I remember feeling very fed up when I had been refused a pump, and reading about how well people were doing on theirs in Balance, or on here. In the end I went back and asked why, gathered evidence that I was meeting each of the criteria and then got the pump.

Just keep asking and talking to them.

 

[KleboldKlan]

Is this correct? If I have 60 grams of carbohydrates it is 6 units extra or 6 units added on to my 20 units of insulin? Might aswell teach myself as diabetes nurse is out of the office till next week

 

[Ljc]

Is this correct? If I have 60 grams of carbohydrates it is 6 units extra or 6 units added on to my 20 units of insulin? Might aswell teach myself as diabetes nurse is out of the office till next week

Hi. Have a read through the BERTIE online course
Back in a mo with a link, unless someone else beats me to it
Here it is
https://www.bertieonline.org.uk/
I am T2 and I found this course very helpful, it was really only these guys here @nd the BERTIE online course that helped me sort out my insulin doses/ carb counting.
TBH it’s not actually that hard once you’ve got the hang of it but the. DF (diabetes fairy) as we call her here , does enjoy throwing a spanner in the works at times.

The bolus (mealtime insulin) doses is not 6 extra on top of what you’re giving yourself now, it’s instead of. How much bolus insulin you need is very individual.
Being T2 myself I can’t really help with that side of things, other than to say keep good records on what you eat,, amoun5 of carbs as all carbs are not equal and insulin doses.
Test, test and test till you’ve got the hang of things .
Good luck
Oh meant to say do press your team to find out why they want you to wait so long as they may have good reason, in the meantime study the BERTIE online course

 

[Vince_UK]

The help and support you guys and gals are giving his young man is astounding. I really mean that.

 

[khskel]

www.bertieonline.org.uk

I hope the link works. This is the online carb counting course.

 

[Sprogladite]

Is this correct? If I have 60 grams of carbohydrates it is 6 units extra or 6 units added on to my 20 units of insulin? Might aswell teach myself as diabetes nurse is out of the office till next week

It would be 6 units total of novorapid for 60g carbs on a 1:10 ratio. Remember to test before your meal and keep a log of what you've eaten, what you dosed, before each meal. Under DAFNE principals, if you are within 1 - 2 if your pre-meal reading before your next meal then that confirms your ratio is correct for that meal. You may find as you experiment that your ratio changes throughout the day for different meals, but you should only change one thing at a time - i.e only basal dose, or one meal ratio at a time, and only make a change once you have an established pattern - the same pattern 2 days running (e.g if you needed a correction at dinner 2 days running, you'd need to look at your lunch ratio). Also for snacks they say to only dose on a 1:10 ratio regardless of what your ratio would otherwise be at that time of day.

Before you start this though it may be a good idea to do a fasting basal test to see if your basal is correct - has anyone explained to you how to do this? x

 

[SB2015]

You mention that you use Novorapid and Tresiba. Sorry I am not very knowledgable about insulins that I haven’t used. Are you using these separately or as a mixed insulin. You will need to be on separate insulins to make use of the carb counting and corrections taught in the course.

Assuming that you are on separate insulins during the course they would help you to work out:
- Is your basal insulin correct
That is checked by doing a fasting test over a few days, by missing just one meal on a day and
checking that your background insuion keeps you BG on target. If you are not sure about how
to do this you need to check with your team.

- Yur own ratio for insulin to carbs.
This helps you then to work out how much insulin you need for the amount of carbs you eat
This will be different for each person and we cannot advise on dosage for you.
On the course they advise you of a starting ratio based on your current insulin
You then gradually adjust this.

- Your sensitivity for correction doses
Again they would advise you of where to start with this.

 

[Lucy Honeychurch]

The trouble is everyone has different requirements. For instance, during the day my ratio is 2 units to 10g of carbs, as I am more insulin resistant in the day. Between midnight and 6am I need 1 unit to 10g (I work nights and am less insulin resistant at night). To reach this conclusion I had to do lots of testing under the guidance of my dietician and DSN and my meter is set to reflect this. My team are very pro carb counting and I was on my local equivalent within a month of diagnosis. I hope they help you with this, you really need to find out why they don't think it's suitable for you. Good luck.

 

[DaveB]

Is this correct? If I have 60 grams of carbohydrates it is 6 units extra or 6 units added on to my 20 units of insulin? Might aswell teach myself as diabetes nurse is out of the office till next week

No, I assume the 20 units is your standard Bolus and will be intended as an standard dose based on a typical meal. When you carb-count you use an amount based on the actual carbs in the meal so from what you say it would be 6 units. Note that if you are on Mixed insulin then you mustn't carb count but most T1s should be on MDI anyway.
I think you need to get tough with your DNs as you have a right for an explanation of their decisions. Any treatment decisions for diabetes should be a shared decision. It sound like the DN is treating you as child in school - not acceptable and not the way mine works. I was taught carb-counting by my DN when I first started insulin and it took 15 minutes and was given a Roche leaflet and told to Google the web to get more ratios - perfect.